There are all kinds of unique and personal things about our relationship that makes this work. We both understand pain and fatigue and share a great deal of knowledge about pacing, resting properly, easing painful parts, keeping warm (but not too warm), hydrated and fed with the minimum of effort. We love food and take pleasure in preparing things the other person will enjoy; some of our sandwiches are works of art. We are very physically affectionate and helping one another wash, dress or undress merges with the fondling and stroking that happens anyway.
And if that sentence made your stomach turn slightly, it illustrates a very important point. But a point I will get back to after I've talked about Stephen's parents.
For the last twenty years, Stephen's Mum has been severely disabled and is rarely able to leave the house. Stephen's Dad is her carer, and is relied upon to do any shopping that can't be done on-line, to run errands as well as to do lots of lifting, carrying and other tasks around the house. But honestly? This is a very egalitarian marriage. There are all kinds of things that Stephen's Mum does, especially when it comes to technical things or organisation, which Stephen's Dad would struggle with. Each relies on the other and each enables the other to have a good quality of life.
Outsiders sometimes express sympathy for Stephen's Dad, for the burden of care he must carry. But if something happened to one or other of them, whoever was left would need outside help in order to cope and carry on. What makes Stephen's Dad a carer and Stephen's Mum merely a wife is the difference between the nature of the help they each need.
So care is often part of the teamwork that happens between couples, friends and in families. I've written before about the dangers of defining it as something you deserve a medal or financial reward for. That stuff bleeds into and swells the idea that disabled people are burdensome - that a disabled friend who can't physically drive is magically more trouble to give a lift to than another friend who never passed their test.
But not all human relationships are the same. My parents have been very happy together for almost forty years (despite what they claim), but I wouldn't fancy their chances if one needed intimate care from the other. It's not a matter of either being too independent or impatient, it's a very complex thing that would make that situation extraordinarily difficult. I have received intimate care from both my parents and I'm not sure I could survive if that was the situation long term. I think it is a very common experience for parents of disabled adults to tend towards reverting back to being parents of small children if they need help with basic things. And that's presuming they're the kind of parents who noticed you grew up in the first place. All kinds of entirely tolerable factors in the relationships you have with your parents can become raging nightmares when you need them to help wash your hair.
So not every disabled person who lives with someone else, even presuming that they are loving and not in the least bit inclined towards abuse (given that half of all disabled women will experience domestic abuse in their lifetime), can hope to receive care from that person. Some people who are good compassionate people make terrible carers, in the same way some decent people happen to be terrible partners or parents (well, not terrible terrible, but incompetent, unreliable or distant).
Meanwhile, not every disabled person can cope with receiving care - especially intimate care - from friends or members of their family. For some it's absolutely impractical, unless someone volunteers to become their shadow and that's not necessarily healthy. But for others it is simply inappropriate. For example, almost everyone has some boundaries around touch and nudity and it's often easier to cope with that stuff around people you don't know very well.
And of course, some people live alone. Some people like very much to live alone. Others don't have a choice.
I have provided care that felt more like work in the past, in a few very different circumstances. It felt like work because either
- The care interfered with my ability to eat, sleep or rest when I needed to or
- The care was more than I could manage without significant physical suffering or
- My efforts were entirely unappreciated (ranging from no word of thanks to verbal abuse) or
- All of the above.
And there is no conveniently crisp line between work people do for pay and things people do out of love, kindness or social obligation. There never has been. You can pay someone to perform pretty much any act that most of us prefer to do for only ourselves and the people we love; people have been employed to cook, clean, have sex, provide massage, breast-feed, even be friends with someone (have you checked out those people? Brrrr.) Meanwhile, people volunteer to do paperwork, people phone-lines, build houses, pretty much any task which one would usually associate with paid work. The help disabled people need may be essential for life or a basic quality of life, but those tasks have no particular status.
This is, as the title warned, a ramble. I don't have any dynamic answers about how we might sort out even first principles when it comes to reforming how care is provided (or most often not provided) in our country. But I think the nuances are vitally important. It's the nuances that create the problem - the over-reliance on family or community to provide care, because families and communities are very good at providing lots of kinds of help and support for free. But the nuances are real, and to ignore them is to reduce disabled people to units of consumption.
While I'm here and on this subject, I really love the look of CURA. It's kind of like a social networking solution to organising the little tasks which friends, neighbours and family can do to keep a person going, and save time and energy for primary carers.
True to form, you have tackled a very sensitive subject with your usual directness and wonderful eye for detail.
Not a great piece of vocabulary from me I know. But, you know what I mean.
Please, please keep on doing what you do so admirably. Tackling such subjects in a way that others can understand and relate to.
There's a lot here that I hadn't thought about - particularly the bit about how sometimes carers talk or are referred to, that feeds into the perception that people with disabilities are a burden. I think we're hearing a lot of that where I am right now because there's very little gov't money/programs for respite for carers, and the little that there is for carers for people with intellectual disabilities just gets clawed back further and further.
It's very frustrating.
Great piece. Very thought-provoking.
Thank you both. :-)
Excellent, as always: so many valid points and sensitvely addressed.
As my situation is evolving here (as the secondary caregiver for my grandmother, who is quite ill), I find that I'm crossing all sorts of boundaries for myself (as to my own health) that I would never require or allow in someone who was caring for me. (Going without sleep or food, not being able to take meds that help with my pain because they are too sedating and she might need help, etc)
It's one of those things that I haven't figured out how to balance yet (this is a relatively new situation for all of us, and the duration of it is... questionable).
So I was glad to see you talking about it, as I try to puzzle it out for myself.
Post a Comment